Work, Work, Work!

Note: For people who are not on Facebook, I am matching all of my donations from June and July, and putting that money toward local charities that provide services for families in need. So far I am up $460. Please donate even $1 or $5, even little bit helps! online.ccfa.org/goto/basmah

I am terrible with writing blogs, even when it is something I am committed to. I have been taking on a lot of stuff outside of the marathon the last few weeks. I returned to work as a youth counselor, and while I love my job it's been tough. I am on the go all the time, lesson planning and staying energetic for the kids. By the end of the day, I am not just tired, I am usually exhausted.

I have learned that some people with Crohn's or Ulcerative Colitis have had to quit their jobs due to not being able to meet the demands. With positions like mine, it is so easy for even a healthy person to get stressed or burned out. I like being in family services too much to give up, but I know that I have to work 100 times harder just to keep up with everyone else. I am the epitome of the phrase, "my own worst critic", but a lot of the time, it would be in relation to the Crohn's - Thoughts like, "If I didn't have Crohn's, would I have the energy to be a more productive worker?" or, "What would I be doing now if I was healthy?"

I have the tendency to think big. While I was in college, I had dreams of working for UNICEF or Peace Corps. Of course, when I started looking into them, I had that horrible flare up that I mentioned in a previous post. It took ages for me to recover, and I just put those dreams on hold.

I am a firm believer that everything happens for a reason. I probably wouldn't be doing the work that I am right now if I was a healthy person. I like that I am focusing more on the local level instead of international. It doesn't mean that I won't ever work out of the country because that would be just too cool to pass up, but I know now that I would rather make a difference one kid, one parent, one family at a time. I want to go to graduate school, but I keep switching between Marriage and Family Therapy and Social Work. Either way, I want to take classes in Integrative Health because changing my diet and lifestyle is the one thing that has helped me out the most both physically and mentally.

Anyway, with all of the work that I have been catching up on, I am still able to train for the half marathon. I can now walk about 10 miles, and I hope to reach 13.1 by next week. It definitely helps with all of the donations, so please do it! Again, 82 cents out of every dollar goes to the patients. Here are some pictures of my walks the last few weeks:

Control

It's been a couple of weeks since I have last posted. I have developed a system where I walk 2-3 miles every day or every other day, and take a long walk one day a week. So far, I am able to walk about 6-7 miles before I get tired. I am hoping to reach 8 miles by the end of this week.

It's just been really rough lately. I have had several doctor visits, and I found out I had osteoporosis (among other things). Apparently, about 30-60% of people with Crohn's Disease get it. This makes me so angry because my doctor didn't recommend the bone density test, I did. If it is that common, why didn't my gastroenterologist warn me about it? I don't understand this method of intervention instead of prevention approach that doctors keep pushing.

Not that I have anything against doctors. Some are excellent, others are just working with what they know. But every time I think that things are falling into place, something happens that makes everything seem out of control. That lack of control can make a person feel guilty. Guilty about not having the energy to help around the house. Guilty about breaking dates with your family and friends. Guilty about calling in sick at work when everyone is counting on you. I love my job, but it is high stressed, and I know that I work 1000 times harder in order to be on the same level as everyone else.

It's times like these that I have to remember that I do have control over. For instance, I have control over my diet (which I will bring up in a later post, but it's extreme at the moment). I have control over what exercises I can do. I have been feeling sick the last few days, so even though I did not walk, I still lifted weights and did some yoga. I have control over my spirituality, which has greatly improves the last few months. I used to struggle with praying because of how angry I used to be - not at God, but at myself; I felt like I was not worthy of praying to him. I was also worried about praying while sitting (Muslims stand most of the time, but sometimes I don't have the energy), and if my prayer even counted. Now I perform all prayers, and I don't worry so much about sitting or standing. Religion is not meant to be hard, but it definitely has made a positive impact in my life the past year.

I have control when I ask for help. Dealing with Crohn's and life in general is so much more difficult if I try to do things myself. I still have difficulty with this, but I am working on it. Most importantly, I have control in telling my family how much I love them and how I appreciate their support. Seeing how many people have donated and are cheering me on, I am thankful for your support too. :)

First Long Walk!!

So i decided to risk it, and walk the long walk a few days ago. My foot is still not completely healed, and I was recovering from a cold. I probably looked ridiculous walking with a winter scarf and headband. I didn't care though; I was determined to see how far I could go.

The first mile and a half was the most difficult. I was cramping and breathing hard. I didn't think I would make it to three miles, but after a while, the pain subsided. I made it to 6 miles in less than 2 hours! It probably would have been faster but I had to take pictures. Can you blame me?

Relationships

It's been a while (no, I haven't been listening to Staind) since I wrote on this blog. I was terrible when it came to writing in diaries or journals. I suppose that's okay since my mom couldn't find out about all the crazy stuff that I did. Just kidding, mom!

Honestly, I was hit with Crohn's full force before I had the opportunity to do anything stupid. I never had the desire to be rebellious, not because I had (and still have) a ridiculously guilty conscience, but because I allowed the disease to take over my life. I never smoked, partied, or even lied about who I was hanging out with. I kept thinking about things such as, "What if I got sick, and I can't find the bathroom?" or "What if I get into so much pain, and there's no way for me to get home?" Overall, I am a very anxious person, and Crohn's with elevated anxiety is never a good combination.

I am an introverted person. I love to spend my time reading, watching movies, and walking outdoors. I prefer to be with a small group of people than go to a party, and am a better listener than talker. With Crohn's, I became more introverted to the point of isolation. I broke promises with friends, and I refused to explain to them why. I didn't want to burden them with what's going on in my life. I didn't let anyone "in" until a few years ago, which made it hard to develop many meaningful relationships in college. Now that I am out of school for the time being, it's even more difficult. I can go  to as many events and gatherings as possible, but it seems like strong friendships and cliques should have already been established. I have also never been in a real relationship before. This was brought home to me when I stumbled upon an article, "What You Should Know if You Fall in Love With Someone Who Has Crohn's Disease". http://thoughtcatalog.com/kim-quindlen/2015/04/crohns-disease-relationships/

I think it's safe to say that I am the type of person who will go to the ends of the Earth to support and help someone I love, whether it's family, friends, or that potential special someone. But there have been more times than I wish to admit when I was unable to be there for someone. It is part of the reason why I am afraid of meeting a guy. When will I tell him how sick I am, and how much information should I share? I don't want to feel pity or that I have to be taken care of all the time, and I don't want him to feel that way. And call me crazy, but I worry about having kids. People have said that the Crohn's goes in remission during pregnancy, but comes back after giving birth. Plus, the idea of kids seeing their mom sick and unable to provide for them is terrifying. I do not want to put them through that, and it is partially why I go back and forth about wanting kids. It's also another barrier I have with guys - how many of them (especially muslim men) do not want kids?

This article along with people in similar situations made me realize that there's someone out there for everyone. I am 28, which means that I am on the borderline in becoming a spinster according to Egyptian tunts, but I am not in any hurry. I will meet him when the time comes. When it does, I will just think about how compatible we are, if he's fun and compassionate, and how many times I will have to tell him to shut up while we're watching the Walking Dead.

Why?

My Endurance Manager for the Dublin team, Angel, asked the members to think about something very important: why? Why am I participating in this race? What's my story? I shared some stuff on the my donation page, but there is so much more to it.

Crohn's Disease practically took over my life up until recently. I had a rough time at the University, I was not getting very good grades for the first two years, and spent the rest of the time just trying to bring my GPA back up. Because I was so worried about doing well and was scared of the idea of not graduating, I did not give myself the chance to truly enjoy my time in college. 

If there is anything worse than the physical limitations of Crohn's, it is the deep isolation and loneliness. While I made some wonderful friends that I still connect with, I did not take the advantage of going out on any given day, or opened up to people to make a lasting impression. I was afraid that being open would make me seem depressing (although I didn't try very hard to hide it), or I would somehow burden people by sharing details about my life. I have been told on several occasions that I am closed-off, and that is why even writing this blog is so difficult for me.  During those years, I developed anxiety and depression, which are very common issues associated with any chronic diseases. 

I can recall one summer when I spent a lot of the time in the hospital. I was out by August, and one of my best friends tried to arrange her birthday party so that I could come. It was supposed to be my first night out in public since I was discharged. A few hours before her party, I suddenly felt anxious about the idea of being in a big crowd at a loud place that I had an anxiety attack at work. A friend picked me up, and took me home. I ended up not going to her birthday, and I felt horrible about it. I missed so many weddings, graduation parties, birthdays, you name it.

I need to mention my family in this post. While I have an amazing support system, my family has been with me since day one. The summer that I mentioned in the last paragraph - well I was stupid, and stopped taking my meds. I stopped eating because I had no appetite, and I was incredibly thin. At the hospital, they treated me for anorexia in relation to Crohn's. I had a PICC line that caused a blood clot (my right arm was huge). I also went through many tests, blood transfusions, eating nasty hospital food (I still don't understand how that garbage helps patients feel better). But the worst part of it was that my family had to suffer all of it, and it was my fault. I never want to do that to them again. That summer is just one example of how much they have been there for me, and words cannot express how much I love them. I still live with my parents (my brother and sister live out of town). I wish I could say that I help out a lot with the cooking and cleaning, but I still struggle to this day to do my fair share around the household due to the lack of energy and fatigue. I try so hard, but always fall short of doing a decent job helping. My family understands what I am going through, but I always feel like I am letting them down somehow. I know that the only person being let down is me. 

Without the Crohn's, I don't believe that I would be the same person I am today. It has given me the compassion and patience to work with kids who have experienced their own traumas. Crohn's has also taught me to be strong and take control over my own life and happiness. While I am not in remission, I am much more healthy and energetic now, and have a more positive outlook with everything. Last, but not least, Crohn's showed me how to love and appreciate everyone and everything around me, and to not take anything for granted. It's like what Rafikki said in The Lion King, "You can either run from it, or learn from it". 

I could go on and tell several stories, but the main thing that I want to point out is that my story is not unique. My "Why" for participating in the marathon is to bring an understanding of some of the things that people with IBD have to deal with. The marathon is for all the times I missed out on important events, for all the times my family and friends were hurting because I was hurting, and for all of the times I fought and still fight the good fight. 

On a final note, here's an update on my training. I didn't exercise much last week because of the colonoscopy (which really sucked), so I am just getting back on track. Today, I went on the bike again.

This was only my second time, and I did strength training yesterday. My plan is to do ST again tomorrow, take a break on Thursday, then back on the bike Friday. I hope to reach a goal of 40 minutes and/or 10 miles. I am planning to go bike shopping this week, because this weather is too beautiful to pass up!

Procedure prep day - blegh!!

I am getting a colonoscopy tomorrow. Before any of you look that up and throw up at the pictures because you did not heed my advice not to search things while eating, let me explain to you what it is. A colonoscopy is a half hour procedure in which the doctor uses a camera to look at the inner lining of the intestines. The purpose of it is to determine how inflamed that part of the body is - aka how active the Crohn's is. It also looks for ulcers, tumors, and polyps that could lead to cancer.

Fact: People with CD are two times more likely to get bowel cancer, and 6 times more likely to get small intestinal cancer. The risk of colon cancer depends on how much the colon is affected by CD.

So it is extremely important for me to undergo a colonoscopy every other year. Surprisingly enough, the procedure itself is not the worst part. Anyone who has gone through any procedure knows that you have to clear the area that is being examined. It is horrendous! I have to start a low fiber diet a few days before, and  the day before (today), I have to be on an all liquid diet - just wonderful for someone who is trying to gain weight - and drink this solution.

Yes, a whole bottle of Miralax with Powerade (did I mention how much I hate Powerade?) I will leave it up to the imagination how crummy this prep feels. A colonoscopy is currently the best way to examine the severity of IBD. However, many people have active disease in areas other than the colon and intestines, so we generally have to take multiple tests. Pill Cams are becoming more common, but they are not as reliable. This is why I am walking for CCFA, so that eventually there will be better testing with more accurate results as well as better treatment options.

First Day of Training.

Last Sunday was my first day of “official” training. I places quotes around official, because I have been exercising on and off for the last year, and lately on a regular basis. However, my goal before was just to gain energy and be healthier. This may seem like a typical New Year’s resolution, but for people with Crohn’s Disease, Ulcerative Colitis, and other forms of IBD, even getting up every day is a challenge. As I have stated in the last post; we also have to deal a lot with fatigue, rapid weight loss/gain, loss of appetite and energy (many people like myself are also anemic), and loneliness. Heating pads and Netflix become our best friends – One thing I can thank Crohn’s for is basically introducing me to “The Walking Dead”. It was a huge challenge to get things started in the gym. That’s why I have a personal trainer to keep me motivated, and it’s helped out tremendously.

Getting back to the topic, because I am underweight, I have been focusing more on strength training. I figure that if I want to be able to walk 13.1 miles in August, I have to start doing more cardio exercises. There is only one problem: I fractured my foot a few weeks back due to a Charlie Brown incident that will only make me look pathetic, so I won’t get into detail. I do have to wear the ugliest boot, which sucks especially during flats season. Anyway, I decided to use the bikes instead. Usually, I only stay on the bike for five to seven minutes so I wouldn’t lose a lot of calories, but I pushed myself. I was surprised with the results, and it can only get better from here!

Yesterday, I did see my personal trainer to lift some weights. I have to take a break for the next few days as I am preparing for a "delightful" procedure on Thursday. More about that next post.

Hello, As Salaam Alaikum, Bonjour, Hola!!

Hi everyone,

Welcome! I am new to this whole blogging thing – yes, I am living in the 21st century – so please bear with me. As my profile indicates, I have had Crohn’s Disease since I was 16. I never heard of it before, so that made everything that much more difficult. For those who don’t know, Crohn’s Disease is an autoimmune disease that attacks the entire digestive system. Symptoms include diarrhea, constipation, fatigue, anemia, joint pain, rapid weight loss/weight gain, nausea, vomiting, and more. Such an attractive thing, especially for a 16 year old. I have taken so many meds, and have been in the hospital more times that If I never have to eat hospital food again, it will be too soon. Through 12 years of trial and error, I have found a regimen that works for me through meds, Traditional Chinese Medicine (acupuncture and herbal tea) and diet. I will get more into that in future posts.

The reason why I started this blog is because I am participating in the Crohn’s and Colitis Foundation’s Team Challenge to walk a half Marathon to raise money for research, trainings, support groups, and other resources for IBD patients. I am hoping that this blog will help not only to reach the goal, but to also get the public to understand what it’s like living with IBD. I will be sharing some personal stuff that I have not been too comfortable in the past. Don’t worry, though, I will leave out the gory details – and for goodness sake, do not look up stuff while you’re eating!

So sit back, relax, drink some herbal tea (or coffee…I do live in Minnesota, home of Peace Coffee), and enjoy. Also, please donate to http://online.ccfa.org/goto/basmah. Thank you! :)